Sickle Cell Warrior Uses Voice To Advocate For Fellow Patients

Sickle Cell Warrior Uses Voice To Advocate For Fellow Patients

“I use the word warrior a lot when I talk about people who battle with sickle cell disease and their families because a lot of times it is a battle.”

It’s a battle 33-year-old Stephanie Ramos knows all too well. It’s one she’s been fighting since birth.

“I was born with Sickle Cell disease. I have a twin brother who has the Sickle Cell trait.”

From roughly six months of age that meant episodes or “crises” as Ramos describes it, each time requiring lifesaving blood transfusions to alleviate what she recalls as tortuous pain.

“If you asked any Sickle Cell warrior, they would tell you it feels like being stabbed. It feels like being hit with a bat. Every second, every minute, every hour that it’s not being treated or taken care of.”

Sickle Cell disease is the most common genetic blood disorder in the United States, impacting an estimated 100,000 people, most of whom are of African descent. The disease distorts soft and round red blood cells and turns them crescent shaped. As a result, blood has difficulty flowing smoothly and carrying oxygen to the rest of the body, which can lead to severe pain, tissue and organ damage, anemia and even stroke.

“It causes a decaying effect in that particular part of the body,” Ramos explains. “It’s not getting the proper oxygen it needs so it starts to die and that’s what we call an episode. It’s pain and a lot of times it causes hospitalization and then most importantly, that leads to a blood transfusion.”

Ramos estimates that she received at least two blood transfusions per year from birth to age 25. In some cases, patients may require as many as 100 units of blood per patient per year to combat the painful effects.

“I always had to take a pack or two of blood. It’s a scary thing. Receiving life from someone I don’t even know. When you donate, you’re donating to someone like me who is in need and it’s needed more than ever.”

Like so many battling Sickle Cell disease, Ramos knows that frequent blood transfusions can make

finding compatible blood types much more difficult and that most often, donations from Black and Brown donors are the most compatible blood types for treatment.

Because of that, Ramos says she was forced to find her advocacy voice – for herself and now others, at a very young age.

“They pump new blood into us. Literally,” she explains. “So, when I tell people about donating blood, I tell them you are literally giving life again to someone whose life is fading away. When I speak to individuals from my background, from my Black and Brown communities, I say we scream that all lives matter – well, this is the start. If my life matters and yours does as well this is the start to show how much we matter to each other, by donating.”

In remission since a bone marrow transplant eight years ago, Ramos is now using her voice to help her fellow warriors through Sickle Cell Advocates of Rochester, or S.C.A.R. The group works to support patients and families affected by Sickle Cell in the Rochester area, hosting educational and social events, fundraising and much more.

“I use my voice because it’s all I’ve ever had. This is part of our toolbox. I’m lucky to be a person who walks in faith and since I can’t donate, let me be a person who can use my words to help bring others to donate and serve as an advocate.”

Part of Ramos’ own toolbox is hosting blood drives through S.C.A.R. and regularly encouraging others in the community to donate. While she recognizes a fear associated with donating, she has this to say on behalf of her fellow warriors.

“We have to watch out for our communities, because if we’re not looking out for ourselves, who is? If fear is the reason you don’t want to donate, then volunteer. Help us out and maybe you’ll learn it’s not a scary thing. And know that for two seconds of being scared, you just gave someone another two seconds of life back.”

One in three African American blood donors are a match for people with Sickle Cell disease. To help ensure patients have the lifesaving blood products they need, the American Red Cross of Western New York works with partners like S.C.A.R. to grow the number of compatible donors. You can help Sickle Cell warriors in the community by making an appointment to donate by visiting RedCrossBlood.org, calling 1-800-REDCROSS or downloading the FREE Blood Donor App on your smartphone.

A second chance at life inspires a full circle moment for Red Cross CPR instructor

This past March, American Red Cross of Western New York intern Sado Isak found herself before an auditorium full of local students.

“I think what we as individuals fear the most ends up being what we’re the most good at.”

A Brockport public health graduate with a fear of public speaking, the 24-year-old intern was leading one of the several Hands-Only CPR courses she would teach that week, each with a mindset that Isak is proud to share with those she encounters.

“Thank God for the good and the bad, because those situations are bound to teach you something. They either make you or break you.”

In her nearly two and a half decades, Isak has learned quite a bit. A native of Uganda, Isak moved to the Rochester area with her family as a 7-year-old after living in a refugee camp and fondly recalled her first interaction with snow.

“I thought it was left over from a party or something, I couldn’t understand why it was all over the place. It was cold!”

But fast forward to March 2020 and Isak will tell you it was her life-threatening experience with COVID-19 at the onset of a global pandemic that helped to fortify her way of thinking.

As she worked to complete her final semester at Monroe Community College, Isak struggled for weeks with an illness whose progression was still relatively unknown to healthcare professionals and the world. After four weeks of battling what she thought was a terrible cold at home surrounded by family, she said her body simply gave out.

“I have never experienced that much pain, that much sickness.”

Paramedics were called to her home and provided lifesaving compressions, resuscitating Isak before taking her to a local hospital for treatment where she quickly recovered.

“I feel like that left a huge mark on me,” Isak explained. “It was very scary. I’ve never experienced anything like that, and I never thought I would be getting CPR done to me. I see this as a great sign that I was destined to do something. I was destined to do something better.”

Since then, Isak has taken full advantage of her second chance – turning it into a full circle moment

pursuing a degree in Public Health and starting an internship with the American Red Cross, not long after another second chance moment seen around the world shone a spotlight on the importance of CPR and preparedness training.

“I’ve been doing a lot of youth leadership programs like Prepare with Pedro, and a lot of Hands-Only CPR trainings,” she explained. “I didn’t really think of the trauma of what I went through, I just thought we need to teach people how to properly treat someone who needs it.”

Since January, the American Red Cross has experienced a notable increase in inquiries about CPR and AED training, and in course enrollments – as well as how to obtain an AED. And while the industry continues to see a growing interest in preparedness training such as CPR/AED training, Isak who graduated from Brockport last month, hopes her experience inspires others to follow suit.

“I’m a huge believer in that everything happens for a reason,” she explained. “If it were you, wouldn’t you want someone to do the same for you?”

Rochester Red Crosser's volunteer career spans 50 years, multiple continents

Born in Madrid, Spain, Maria Polo and her family moved to Colombia when she was around 9. She considers herself to be of Colombian culture and, before moving to America and becoming an American citizen, she called Colombia her home country.  Her father founded the Universidad Autonoma de Colombia in the Capital city of Bogota.  The university is still there and growing today.  This is where Maria started her service with the Red Cross that just recently reached the 50-year mark.  

As a young woman in her twenties, and a member of an educated upper-class family, she saw poverty and mistreatment around her and vowed to help wherever she could.  Raised in a family that believed the secret to one’s own inner peace was found by helping others and never asking for anything in return, Maria truly grasped this belief at a very young age.  She and her young daughter started volunteering at a nursing home in Bogota, Colombia.  Upon realizing the poor conditions and lack of resources at the facility, she was compelled to volunteer every Sunday to help the residents by providing music therapy, massage therapy and helping in any way she could.  She continued this volunteer effort for the Red Cross in her native country for five years, thus beginning her many years of service with the Red Cross that has spanned multiple continents. 

Maria moved on to serve for the International Red Cross and ended up serving on missions in 57 countries around the world.   The list includes, Ecuador, The Amazon rain forest, Colombia, Brazil, Venezuela, Philippines, Japan, Vietnam, Thailand, Laos, Shanghai, Hong Kong, South Korea, Jeju Island, Egypt, Syria, Jordan, Saudi Arabia, India, Ethiopia, Egypt, Ethiopia, United Arab Emirates, most countries in Europe and so many more!   Tsunamis, floods, civil unrest, medical missions and earthquakes are just a few of the types of deployments Ms. Polo has done over the years.  Whether its riding a motor bike an unknown amount of miles into the country to obtain rice to help feed a village of starving people, diving in dangerously swift water to help drowning victims, traveling two weeks on foot into the Amazon forest on a medical mission or getting a crash courses in suturing up patients during volunteer surgical missions in Central & South America’s, it’s clear that Maria has had quite an interesting and lively international volunteer career experience.  

She talks about how the missions aren’t easy and how when on them you don’t get special treatment - nor did she expect it,

“You just never know what to expect during these deployments, we just show up and help with

whatever is available at the time.  If they do not eat, we do not eat, if they sleep on the ground, we sleep on the ground.”  Her belief in helping others is so strong she hates to use the word sacrifice to describe giving up her time and vacations over the years to go on these missions. 

“If I say it’s a sacrifice then it means I do it to get something in return, and that’s not it, not the reason, it comes from inside, we need more people to get that!”

In between all the excitement of her international missions she has also volunteered in her own backyard over the years.   Not only has she been a volunteer for local crisis situations such as fires in the greater Rochester area, and other local Red Cross work, but she also volunteered for the Hispanic and Black Youth Leadership Programs in the Rochester area for almost 27 years.  She started volunteering for these organizations in 1994 working with the program director. The program had a mentoring element and covered topics such as diversity, equity & inclusion, financial literacy, conflict management, time management, resume building, leadership skills & development. To this day she has stories of people coming up to her and remembering her by name, thanking her for the guidance and knowledge they learned in these youth programs. She finds these to be very rewarding experiences, knowing that she played a small part in helping these individuals grow and develop into successful members of the very same community.

“Educating the people is what we need to do to make it better, knowledge isn’t always learned in the school.” This is one of the most important secrets to a better future, according to Polo.   

During this wild ride of a life she moved to Toronto, NYC, Boca Raton, North Carolina and finally settled in Rochester.   Maria had previously obtained her bachelor’s degree in computer science and spent several years working in the accounting field for the Caja Agraria Bank in Bogota, Colombia.  After moving to Rochester, she went to SUNY Brockport and earned her Bachelor’s in education and was an assistant Spanish teacher in the Rochester area. Maria has also obtained her certification in medical massage therapy.  She has overcome some major tragedies in her life in recent years as well, which just goes to prove how strong this woman truly is.  In 2017 she was in a terrible car accident and was struck by an on-coming car.  Suffering from a traumatic brain injury, among many other injuries, she was in a coma for over a month, and upon waking was unable to talk or walk.  She was told that her chances of walking and talking again were almost non-existent.  But shockingly enough, with the help of her family, and some friends made through her missions, she has beat those odds!  Not long after, in December 2021, tragedy struck again.  She had a house fire and lost everything.  Coming home from work early one day, she found her home filled with smoke.  Knowing her dogs were inside, Maria selflessly entered the home to save the animals, getting all three out to safety.  Unfortunately, most of her prized possessions from her many trips were lost in the fire.  Pictures, logs, keepsakes, etc. were gone.  This has made it difficult for her to keep track of her experiences and her past missions.  Fortunately, her son and daughter help her keep her memories alive.  She has told her children about her missions over the years “so many times that they roll their eyes when I start to talk about them!”. 

Today Maria can be found spending her time at one of the Rochester area blood donor centers volunteering as a Donor Ambassador.  She is also going back to school at the Rochester Institute of Technology’s Osher Lifelong Learning Center to continue her education.  She is currently studying Medical Ethics, Topics in Modern Cognitive Science, Climate Change & Global Warming, and also has an interest in natural and alternative medicine, preventive medicine and mysteries of the mind.  You can usually find her at different parks in the area with her dogs enjoying the outdoors, and at the YMCA most mornings taking part in various exercise classes, and staying healthy and in shape, (she used to run marathons!)  

Over the years, Maria has had so many wonderful learning experiences and met so many people, the extreme gratitude for the life of service that she has lived is clearly evident when she recalls her Red Cross work.  The hundreds, if not thousands, of people with whom she has interacted are grateful for the energy, knowledge and compassion she has shared as well.

Jodi Zielinski, Communications Volunteer, American Red Cross of Western New York

Springing ahead? Don't forget to "Turn and Test"

Daylight saving time begins this Sunday, March 12, and the American Red Cross of Western New York encourages everyone to TURN your clocks forward one hour, and TEST your smoke alarms.

Did you know that having working smoke alarms can cut the risk of dying in a home fire by half? Home fires are the nation’s most frequent disaster with Red Cross volunteers responding to an emergency every 8 minutes, on average. In the month of February alone, Red Cross of WNY Disaster Action Team (DAT) members provided immediate emergency assistance in the aftermath of home fires to 269 individuals across our region.

That’s why it’s critical to “Turn and Test” this weekend and take these lifesaving steps to keep your loved ones safe in the event of a home fire. 

·         Install smoke alarms on every level of your home, including inside and outside bedrooms and sleeping areas. Test alarms monthly and replace the batteries at least once a year if your model requires it.

·         Replace smoke alarms that are 10 years or older. That’s because the sensor becomes less sensitive over time. Check the date of your smoke alarms and follow the manufacturer’s instructions.

·         Practice your two-minute escape plan. Make sure everyone in your household can get out in less than two minutes — the amount of time you may have to get out of a burning home before it’s too late. Include at least two ways to get out from every room and select a meeting spot at a safe distance away from your home, such as your neighbor’s home or landmark like a specific tree in your front yard, where everyone knows where to meet.

·         Teach children what a smoke alarm sounds like. Talk about fire safety and what to do in an emergency.

Visit redcross.org/fire for more information, including an escape plan to practice with your family. You can also download our free Emergency app by searching for “American Red Cross” in app stores. 

HOME FIRE CAMPAIGN SAVING LIVES The Red Cross responds to more than 60,000 disasters every year and most of them are home fires. To help prevent fire-related deaths and injuries, the Red Cross launched the Home Fire Campaign with community partners in 2014 to reduce fire-related deaths and injuries.

Recently, with support from thousands of community partners, the campaign met its goal of installing 2.5 million free smoke alarms and making 1 million households safer across the country. So far, the Home Fire Campaign is credited with saving more than 1,583 lives in the U.S. Because home fires remain a daily threat and the campaign has made a lifesaving difference, the Red Cross will be continuing the program with community partners as part of its standard services across the country.